Julia Quinlan, mother of Karen, reflects on 40-year milestone

Forty years ago on March 31, a landmark New Jersey Supreme Court decision regarding a young woman from Roxbury altered the legal and ethical landscape of healthcare across the country and around the world.

Her name was Karen Ann Quinlan, and her tragic circumstance led to the establishment of living will and other rights of hospital patients, including their legal “right to die.”

Quinlan, 21, lapsed into a coma in 1975, allegedly after mixing alcohol with a tranquilizing drug. Once her condition was considered irreversible, her devoutly Catholic parents, Joseph and Julia, asked her doctors at St. Clare’s Hospital to remove her from the respirator that was keeping her alive and put her fate “into God’s hands.”

But the hospital officials refused their unprecedented request on moral and legal grounds, setting off a year-long series of court battles and front-page headlines. The case progressed to the New Jersey Supreme Court, where Chief Justice and former New Jersey Governor Richard J. Hughes announced a unanimous decision in favor of the family on March 31, 1976.

"We have no hesitancy in deciding ... that no external compelling interest of the state could compel Karen to endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient life," Hughes wrote in his decision.

"It has become a polestar for contemporary bio-ethics and a guiding principal of how we treat each other at the end of life," said Paul Armstrong, who represented the Quinlans in court and later became a judge in Somerset County. "It has been translated into 64 languages and is still cited any time new medical technology is introduced and new questions arise."

"We had no living wills, no advance healthcare directives at the time," said Morris County attorney Thomas Curtin, who was appointed by the court as Karen Ann Quinlan's legal guardian during the hearings. "Nationwide, we had no clear definition of death."

On May 19, 1976, 399 days after being put on the respirator, Quinlan was removed from the machinery and transferred to Morris View Nursing Home, where she lived for nine years before dying of respiratory failure on June 11, 1985.

The Quinlans turned their tragedy into a legacy of hope by establishing the Karen Ann Quinlan Hospice in Newton. The nonprofit organization has helped thousands of terminal patients and their families through the painful transition to death. It grew in 2014 with the opening of the Karen Ann Quinlan Home For Hospice in Wantage, a $5 million facility with room for 10 patients who can live their final days in a home-like setting with a pastoral view of Sussex County.

Julia Quinlan, 89, is still fully involved with the hospice, which tends to upwards of 100 patients on a given day. She serves on the hospice board with her daughter, Mary Ellen, and son, John, director of fund-raising. Wednesday, Julia Quinlan sat down with the Daily Record to reflect on the past 40 years.

Daily Record: Tomorrow is the anniversary of the Supreme Court decision.

Julia Quinlan: And yesterday was Karen’s birthday. It’s been a heavy week. It’s not something that you get over. And it brings back a lot of memories.

Q: Obviously Karen’s name and story still resonate, but most people associate the name with the case, not the person. What was Karen like?

A: Karen was truly a delight. She should have been a boy, really. She taught John how to wrestle. She was a lifeguard down at Lake Hopatcong. She played tennis. When she would come in the house, she would swing me around. And she had a beautiful voice. You would think it was Judy Collins singing. She had a contagious laugh that you had to laugh with her.

She loved life and lived it to the fullest. And to see her, you know, in that position for 10 years ... We had to fight to do what we knew she would want us to do.

Q: By that you mean take her off the respirator?

A: We knew she would say "This is what I want, mom. Please get rid of all these things." She tried so hard to release herself. She would twist her head and try to release it.

Q: So you asked the doctors and, when they refused, you went to court.

A: I guess (the court decision) was in our favor, but I also knew that I would lose my daughter, because we all thought she would die as soon as we removed her from the respirator.

Q: But she lived for a long time.

A: Nine years. I should have known that. She was a strong girl. I can remember so many times, she had pneumonia and we thought she would not recover. But every time, she fought back, she bounced back. We would visit every day. But the last time, I knew — you could just tell — and I told everyone to come because it would not be long before we lost her.

Q: You speak of that as when you lost her, but hadn’t you lost her already at that point?

A: You know, that’s a good question. She was still alive, and she was still my daughter.  We visited her every day. It was more of a prayerful time for me, sitting by her bedside. And you know, I could hold her hands. And I would pray. And while I sat there, I would write poetry. And I would talk to her because they tell you that you never know what they can and cannot hear.

Q: By then, you and your family had already launched the hospice. Why did you decide to take that on?

A: Hospice is a blessing for those who need it. Giving hospice to my husband was a blessing he gave to me (Joseph Quinlan died in 1996). Karen received wonderful, compassionate care at St. Clare’s and Morris View. But a hospital cannot provide the comfort of your home. Our hospice nurses are in the home 24/7, taking care of the patients, and their families. And when we were planning the home for hospice for those who needed it, I was very insistent that I wanted it to be like a real home.

Q: It must have been quite a challenge to operate a hospice.

A: No, you see, the day we decided to have this hospice, I dedicated my life to it. I can’t come in as often now as I did in the past, because I’m a little older than when we started it, but it’s always been my life’s dedication.

Q: Certain aspects of this work must be difficult, though.

A: It’s not like working in a hospital, where most of the time, the patients get better and go home. With hospice, you know they aren’t going to live. You have to be a special type to person to work for hospice.

Q: What is it like to work here? Can you have fun working at a hospice?

A: You know, people ask that. We laugh. It is light here. We don’t talk about dying all the time. People might not understand that. Our staff, they’re great people, most unusual people. I don’t think that you can work in a hospice if you aren’t dedicated. We have a dedicated group and they stay with us. The atmosphere here is just wonderful. Really, a very happy environment.

Q: It must be expensive to run a hospice, especially with a new $5 million facility to pay for. Where do most of the funds come from?

A: Oh, the community, definitely. The community has been very supportive. We tried to raise the $5 million at a time when everyone was hurting, but we still raised about $2.5 million.

Q: Any plans for further expansion?

A: We have a beautiful bereavement program that is a very important part of our hospice because we are dedicated to being there for the family before, during and after death. It is based in (downtown) Newton and has grown tremendously, so we are looking for a larger place.

Q: Let’s go back again to when the case was in the news. It was a sideshow, and might have heralded a future where the public becomes obsessed with high-profile cases, following them on TV and social media, commenting every step of the way. Do you see these reports now, see the people involved and think "That was us 40 years ago?”

A: When I look at that, I think what affected my family most was that we were very private people, and we lost that privacy. But I try to look at it in a different perspective. In a way, if it wasn’t for reporters, if it wasn’t for all that publicity, people would not have known about it. I had reporters come into our living room and they were very respectful. Of course you always have the other side. Some, you look back and say, did they really have to hide behind bushes? They must have so many pictures of Joe taking out the garbage. But that was their job.”

Q: Not just traditional media these days but social media, of course, has compromised privacy for a lot of people.

A: Today you have the cell phones, you have Facebook. My own feeling is that we’ve lost too much of our privacy. I am very protective of my privacy, more so than the average person because I lost my privacy once. Without it, things get blown out of proportion.

Q: Yet your fame, such as it is, has helped to build a hospice that has cared for thousands.

A: Whenever I go to the supermarket, someone always comes up to me and says "Thank you Mrs. Quinlan, thank you for helping my loved one."  And I thank them for sharing that with me. That’s what hospice is all about. It’s reaching out to the people. I love when people share that with me because then I know our hospice is doing good. It’s doing what it’s supposed to be doing.

Q: Do you ever reflect on what all this has meant to the world, and what you, your daughter and your family have accomplished? Things like living wills and patient bills of rights did not exist before your case went public.

A: I do, often. Particularly yesterday while driving home on Karen’s birthday. Like I said, this has been a particularly heavy week, but I have to be thankful for who we are. When Karen (who was adopted) was placed in my arms at the chapel at St. Joseph’s hospital in Scranton, this beautiful baby, Joe and I just thanked God. We were blessed. We became a family. Never ever did we envision that Karen’s life would be such an important part of so many thousands, millions of people’s lives. She is not aware of all this, yet her life has served a purpose and continues to serve a purpose, not just today and tomorrow. It will go on and on.

Q: What do you think Karen would have thought about all this?

A: Mary Ellen was the one who put it so beautifully. We don’t have Karen anymore, but we have the hospice, and the hospice is Karen. It is what Karen would have wanted us to do because Karen would always reach out to people in need.

Do I wish Karen was still here? Of course I do. But I am thankful that her life is still serving a purpose, and I know she is watching over it.

The Karen Ann Quinlan Hospice will host a fund-raising awards dinner on April 28. For information, call 800-882-1117 or visit www.karenannquinlanhospice.org. 

Staff Writer William Westhoven: 973-917-9242; wwesthoven@GannettNJ.com.